been told i have CKD

steveiec
steveiec Community Member Posts: 2 Listener
edited April 2025 in Start here and say hello

Just been told i have CKD and been referred to local hospital renal unit,can anyone advise me what to expect,i have no idea..type1 diabetes over42years,ischemic heart disease.the list is long lol.

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  • Sandy_123
    Sandy_123 Scope Member Posts: 63,231 Championing

    Hi @steveiec welcome sorry I can't help with your diagnosis, but good luck at the hospital

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  • Mary_Scope
    Mary_Scope Posts: 6,299 Scope online community team

    Hi @steveiec and a warm welcome to the community!

    It's lovely to have you here and I hope you find it to be a safe and supportive space😄

    I am just going to edit the title of your post so it makes it easier for other members who have been diagnosed with the same conditions easier to find and will hopefully be able to offer their own experience and peer support, hope thats okay

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  • CountryMimi
    CountryMimi Scope Member Posts: 198 Empowering

    Hi @steveiec I also have CKD. I'm so sorry, it's such a worrying diagnosis. When I was diagnosed in March 2023, I was stage 3a. After a visit to my local walk in, I've been told that my kidney function has declined to 3b - long story, but I have issues with my GP and Renal Consultant communicating, so I'm currently waiting confirmation on this.

    In terms of what to expect, I can only tell you what my experience has been. If you're with a renal consultant, I believe it's a check up every six months. Though, because of the issues I'm having with results and communication, I think by the end of July, I'll have had 3 consultations. I think the reason I'm under a consultant is because I've been hospitalised a couple of times with severe kidney infections, which led to my CKD diagnosis.

    For me, it's difficult to say that some of my symptoms are down to CKD as I have a number of other health conditions that have some of the same symptoms as CKD. I personally suffer from incontinence, which is from Cauda Equina Syndrome, but whether it's exacerbated by CKD, I'm not sure. I also have water retention and most days wake up to what I refer to as 'elephant legs'.

    Over the last few weeks I've started really struggling with breathlessness - again, this could be down to CKD, or it could be that I'm having a reaction to Ramipril (recently prescribed for high blood pressure).

    Sorry, this probably isn't very helpful in terms of what to expect. There's quite a lot of information on the following sites, which might be helpful 🙂

    https://kidneycareuk.org/

    https://www.kidneyresearchuk.org/kidney-health-information/about-kidney-disease/

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